Living Well w/Duchenne Conference 2026

Join us for our 4th Annual Living Well w/Duchenne Conference, dedicated to empowerment, education, & the enduring strength of DMD children.
About this Event

Living Well w/Duchenne Conference is a premier gathering dedicated to shifting the narrative around Duchenne Muscular Dystrophy (DMD). While clinical research is vital, this conference focuses on the "now"—equipping individuals, families, and caregivers with the tools, community support, and innovative strategies necessary to foster a life defined by possibility rather than limitation.

Free parking, continental breakfast and lunch will be served.

Agenda

🕑: 08:30 AM - 09:00 AM
Living Well w.Duchenne 2026

Info: Registration;
Sign up for Adapted for DMD Tennis Clinic;
Continental Breakfast

🕑: 09:00 AM - 09:15 AM
Welcome
Host: Founder/Ceo

Info: Karen Guillmeno

🕑: 09:15 AM - 09:45 AM
Straight Talk
Host: Abhik Banerjee MD, PhD

Info: What you should be asking from your clinics multidisciplinary care) and why multicultural clinics matter.

🕑: 09:45 AM - 10:00 AM
Panel#1: Bullying and patient rights
Host: Lorran Garrison, MS, Med, PPS School Psychologist (Ala

Info: What should the school’s response be
to bullies, what resources should you
ask for?

🕑: 10:00 AM - 10:10 AM
A Parent's Story:
Host: Lois Saur Sunga

Info: How the school changed to accommodate my son with DMD

🕑: 10:10 AM - 10:30 AM
Disabilities Advocacy
Host: Adam Wasserman, JD

Info: Overview of California’s antibullying

laws pertaining to DMD

🕑: 11:00 AM - 11:30 AM
Exons Skippers
Host: Julian Thomas MD

Info: The new exon skippers coming down the pipeline

🕑: 11:30 AM - 12:00 PM
Gene Therapies
Host: Melissa Spencer PhD

Info: The new gene therapies coming down the pipeline – what is so different?

🕑: 12:00 PM - 12:30 PM
Neuromuscular Equipment Specialist
Host: KJ Phillips

Info: Power wheelchair? Scooter? Power assist? Which is best for my child?

🕑: 12:30 PM - 01:30 PM
Lunch
🕑: 01:00 PM - 02:00 PM
Panel #2

Info: Clinical trials for DMD in minority populations

🕑: 01:00 PM - 01:20 PM
Deramiocel
Host: Leigh Ramos-Platt MD, MBA

Info: Deramiocel and the clinical trial experience in non-English speaking populations

🕑: 02:20 PM - 02:50 PM
Inclusion and Engagement
Host: Eric Ishiwata PhD

Info: Why it is important to engage a diverse
community into clinical trials and
advocacy; history and potential
solutions